social work consultancy - irene nicholson

We were delighted Irene was able to visit India and offer consultancy with her skills in social work. You can read her reflections below. She was able to do an amazing amount in a few months supporting colleagues in CMC, as well as taking part as faculty for the Refresher Course in Trivandrum and attending the IAPC conference in Kochi. At this latter event she helped facilitate the first national network of palliative care social workers. (an important moment captured here) Many thanks to Irene for her enthusiasm, commitment, willingness to try anything once! and for sharing her skills and her self. I know her contribution was very much appreciated by the CMC team - and by Cairdeas. Irene will be sharing more of her experiences at our annual Cairdeas gathering this weekend in Aberdeen

'I am Head of family Support Services at Grove House Hospice in St. Albans. My background is in Social Work, counselling, and training.
I was fortunate to be able to have the opportunity to work alongside the Palliative Care team based at the Christian Medical College in Vellore and also with the newly opened hospice from January to March. I spent time with the Social Worker there, Ramu. (pictured with me and Aneeja, social worker from Trivandrum below) He introduced me to Palliative Care Social Work in India, and we were able to work together as Social Work colleagues, sharing our knowledge and information. Mondays was “our” day, we spent the time doing planned visits to patients and families within a thirty mile radius of the hospital. We would take local buses to out-lying villages, often walking across fields to reach the family home. As resourceful Social Workers, we would take water, our lunch, and hats to protect us from the fierce sun (30-35 degrees ) Much of Ramu’s work with families was assessing their income, encouraging children to attend school, and educating them about cancer and how to cope with the practicalities of the disease. It was a wonderful opportunity for me to work with Ramu, and we learnt so much from each other. We enjoyed each other’s company, and Ramu was keen to teach me the local Tamil language.

I also worked with the young staff team at the newly opened hospice at the Sneha Deepam campus, about four miles from Vellore where I stayed. This was a very rewarding experience, the team were keen to learn, and language was no barrier.

On a lighter note, I really enjoyed the food, mostly vegetarian (and always curry! ) It was also great to spend time with” Dr. Mhoira “, and to learn more about the dedicated work of this amazing team. My grateful thanks to Mhoira and Cairdeas for supporting and encouraging me in this very worthwhile venture.'

pallium partnership - refresher course

One of the exciting developments for Cairdeas is the continuing partnership with Pallium India. As you can see from their website http://www.palliumindia.org/, Pallium India is committed to supporting the development of palliative care in a number of ways. Their activities include supporting clinical services, providing education and offering advocacy for access to morphine. We have worked together for 2 years now mainly supporting education and training, although relationships go back nearly 10 years since I first met the founder of Pallium India and now my good friend Prof Rajagopal.. We are also discussing plans to develop mentorship for new centres.

Our most recent collaboration was back in February when I was privileged to help co'ordinate and deliver a Refresher Course for experienced palliative care clinicians in Trivandrum, Kerala. Together with Raelee Jenson, an experienced nurse trainer from New Zealand who works with Pallium, and Dr Baburaj we put together an innovative programme for the 3 days supported by an amazing international Faculty and enthusiastic delegates. We welcomed Faculty from the UK, New Zealand, Australia and Malaysia (see Lalitha in the photo) as well as India ; all there at the invitation of Prof Rajagopal. Using case based scenarios we explored many areas of relevance to palliative care such as collusion, difficult symptoms, rehabilitation, hope and looking after ourselves. Team exercises led by Gary from Severn Hospice were great fun - why do you think were we pretending to be sheep? For all who attended it was an opportunity to learn together, share more deeply the challenges of working in palliative and be genuinely refreshed and supported. Time on the beach at the end was a real treat for some Faculty - here is Deirdre and Robert Twycross and Bill Grech with yours truly.

Cairdeas was able to offer 4 scholarships to colleagues who would not otherwise have been able to come from Hyderabad, Mizoram and Lucknow; here are some comments from Dr Evelyn, Hyderabad. (pictured with Jeremy and Penny Johnson from Severn Hospice)
'The Refresher Course brought together many renowned people from all over the world including Dr Robert Twycross and Prof Rajagopal under one roof! There was so much to be gained by just being present in the midst of so much experience and the remarkable faculty to student ratio. I learned many things....many issues and principles of Palliative Care are the same; no matter what country you belong to. Suffering and death are great equalisers. Sharing ideas and exchanging contacts with many people with the same interests are even now, a great source of encouragement. Putting my own work into perspective I realise there is still much to be done. I realised too that I need to look after myself. The course was a blessing and great encouragement to me and I would like to extend my sincere gratitude for the scholarship assistance provided to me'

To finish this post, a quotation from the ancient Sanskrit poet, Kalidasa that appeared in a recent Pallium India newsletter; 'We have watered the tress that blossom in the summer-time. Now let's sprinkle those whose flowering time is past. That will be the better deed, because we shall not be working for the reward.'

colleagues and conferences

February in South India is a beautiful month and therefore a popular time for conferences visits from international colleagues. Many give their time generously from busy UK schedules. So, what can be achieved in these consultancy visits? Judith Smith has been visiting India since she spent 5 months in Calicut in 2005 and has visited as a Cairdeas consultant for the past 2 years. She has a particular skill in mentoring and supporting young nurses who may be only starting their palliative care and training or working as health care assistants. These visits can be challenging too as the vagaries of travel, planning and life in India take their toll! As part of our partnership with Pallium India Judith supported the nurse training in Trivandrum along with Raelee Jensen then came over to Vellore to support training at the new hospice. Here is an early morning session. Sr Patsy spoke of the great benefit of these dedicated nurses training sessions in reflecting on current practise, refining skills and knowledge and the opportunity to discuss concerns. We also visited the Tamil Nadu government cancer centre at Kancheepuram; a place where thousands of the poorest people are treated and a new palliative care service is developing. These visits help to raise profile as well as offer teaching.

The 15th international conference of the Indian Association for Palliative Care was a great occasion. Held in Kerala at Kochi, the pearl of the Arabian Sea, the focus was Quality and Coverage. More than 400 delegates from across India gathered with a significant number of faculty and delegates coming from abroad. This group dressed for the gala dinner come from Bangladesh, the UK, Uganda, Zimbabwe and the WHO! After many years of advocacy and developing innovative services in India, there is a need to review quality and a working group presented a draft paper with minimum standards for palliative care services. This will now be discussed, piloted and we hope implemented by the IAPC in due course. Congratulations to the organising team for Kochipallcon - I know something of the hard work and moments of anxiety and the whole team were rightly proud. It was a colourful, warm, professional, rich experience for all of who took part. There was a special lifetime award presented to Robert Twycross for his support to palliative care developments in India. We were particularly pleased to be able to support the faculty visit of Dr Lydia Mpanga Sebuyira from Uganda. She is the Director of Education at the Infectious Diseases Institute in Kampala and previously Director of Education at Hospice Africa Uganda - as well as a good friend! Being able to share experiences and learning across different centres and continents is a great encouragement. This lovely photo shows Lydia as well as Judith and Irene. Irene, a senior social worker from England has just completed 3 months at CMC Vellore. We will share more of her visit and the developements in social work in a BLOG post very soon.

colleagues and courses

Firstly, my apologies for the late post. It has been a very busy and exciting month and I am looking forward to telling you more in the next few posts. We have had 5 colleagues visiting, many great teaching and training initiatives, 2 international conferences to attend and a first for Cairdeas. My thanks to all our consultants in India this month; Irene Nicholson, Judith Smith, Kenny Ferguson, Gillian Craig and Lydia Mpanga Sebuyira.

I will start with our 'first'. You may remember a few years back we supported training for the management of chronic oedema; led by Kenny Ferguson. This is a chronic and debilitating problem that affects many people - especially those with cancer. Some patients travel hundreds of km to try and get help - often too late. Although treatments can be very straightforward, when there is no one to help they suffer a cycle of infections, pain, disability and social isolation. We have been planning with several Indian colleagues to support a cohort of Indian trainers - that can use their expertise to train others and to start local services. This planning culminated in the first national 'training the trainers' course for chronic oedema management. 18 delegates gathered from 7 centres for this 5 day hands on training at the Education Centre, Sneha Deepam part of CMC Vellore. Kenny and Gillian, both experienced clinicians and teachers from Grampian in Scotland, quickly adapted to street life in India. Do you fancy a cut throat shave??

To illustrate the problem let me introduce you to
Muthuswamy. He was attending clinics for his leg swelling some time and his problem was beginning to come under control. However, he was so encouraged to be able to receive expert advice and to get a stocking that fitted his leg. His friend also had some ideas about how to access materials for bandages in India so all in all a great consultation by our course facilitators!


The course delegates were an amazing group. They were so excited to be able to access training - but also to meet together, share experiences and plan for the future. We now have seven implementation plans and will hope to offer mentorship and support in the months and years to come. We had a great social evening when we shared Indian cultural music with a tune on the 'moothie' from Kenny and Scottish dancing for all! A huge thanks to all who attended for their enthusiasm and commitment, to the course facilitators Kenny, Gillian and Shakila, to Hamilton and the team at CMC Vellore for hosting such a great week and to you for your support in so many ways.

Lastly some encouraging news. I have just heard from Cansuppoprt in Delhi who sent 2 delegates. Already they have arranged a training programme for in chronic oedema. I might even be able to get a quick photo to show these new trainers in action!

Welcome to 2008

I wonder where you were this Christmas and what you were doing to mark the New Year? More importantly, what are your reflections on the year so recently lived and your dreams and hopes for the year ahead?
(photo shows Kovallam Beach, Kerala on Christmas Day and Indian Santa with me on Christmas Eve)
Thinking back to the past year for Cairdeas there have been many achievements and blessings. We have been privileged to work with colleagues in India and Africa. At CMC Vellore we have been involved in exciting projects such as the Fellowship in Palliative Medicine and the Diploma in Family Medicine. The new hospice now has patients after much anticipation! In Malawi we were able to help with training the trainers and sensed real hope for the palliative care movement there with such able and committed leadership. In partnership with Hospice Africa Uganda we are shaping plans to see palliative care develop in the university and teaching hospital setting in Kampala. We also were represented at the 2nd conference for palliative care in Africa - APCA Nairobi; and saw the incredible progress in many countries.
This coming year what are our hopes and dreams? To continue to see those in need receive the help they deserve. To support and train those who are committed to making a difference. To share our skills, time, love and most of all ourselves. To learn from those we work with and those we seek to serve. To be motivated by compassion and our shared humanity for if one person is suffering then it touches us all.

Let me tell you a story from the Hospice in Vellore. Shanthamary has a very difficult and heart-rending story. She received treatment for cancer including surgery but her wound had broken down and become infected. Her dressings were filthy and in rags and her family were desperate but too poor to get help. When the social worker visiting from CMC saw her in the village she was horrified to see the misery of her condition and even the dogs pulling at her clothes. She came straight back and asked if the palliative are team and hospice could help. This picture was taken 2 days later and I have Shanthamary's permission to tell her story. She has been admitted to the Hospice, her pain controlled with medication, her wounds cleaned and dressed, her beautiful hair washed and combed, her clothes freshly laundered and food provided for her and her family who are now staying with her. She is still very ill but what a transformation when loving and skilled care is offered. (the photo show the Sisters Patsy and Victima who are in charge at the Hospice)

The next few weeks and months for Cairdeas are exiting as we welcome 5 colleagues to India to help with training. We are delighted to be working in partnership with Prof Rajagopal and Pallium India and I will send updates of the various programmes on this BLOG. Later this year we will be focussing on the plans to support developments in Uganda.

(last sunset of the year over the Arabian sea and fireworks to usher in 2008)

What about our personal dreams and goals? Let me share with you some verses from the bible which I read today which inspired me. 'Don't worry about anything; instead pray about everything. Tell God what you need and thank him for what he has done' and 'Take delight in God and he will give you your heart's desires. Commit everything you do to him, trust him and he will help you'
Wishing you all a Happy New year.

Mulago Hospital, Kampala

As promised in my last post let me tell you a little more about Mulago hospital and the project Cairdeas is hoping to support. Founded in 1913 initially to treat infectious diseases, including sleeping sickness, it soon grew to an unwieldy level until a new hospital was opened in 1962 and refurbished in 1987 . It is the main referral and teaching hospital for Uganda and hosts the medical school as part of the Faculty of Medicine at Makerere University. There is also a nursing school and institutes of public health, cancer and infectious diseases. Makerere is a prestigious University which grew out of the University of East Africa; becoming independent in 1970. Medical students have been taught palliative care since 1993 with a clinical rotation to Hospice Africa Uganda (HAU) The Mulago palliative care team began in 2006 with the appointment of 4 nurses who had been trained at HAU. Here they are hosting a visit from a team from Rwanda. Do you recognise Grace, left front row, who featured in a previous BLOG and is the first nurse in Rwanda to be trained in palliative care? The team have achieved much in a year but are desperately needing more resources and senior medical support. We are looking to form a much more comprehensive service and be able to offer it as a centre of excellence and a 'model' for colleagues in teaching hospitals and universities elsewhere in Africa. It is a big challenge but also a great opportunity.
One of the most successful recent initiatives has been children's palliative care and I want to take you with me to the cancer treatment ward. Caroline Rose, a paediatric palliative care nurse from the UK along with Dr Justin Amery, nurse Charles from Hospice and joined by teachers / play facilitators have worked with the oncology teams to make a difference to the lives of the children and their families. There are murals on the walls, a new classroom, morphine (can you spot the bedside bottle?) and other drugs made available, support for families and helping with the treatment costs of children with Burkitt's lymphoma via an Irish fund. The day I visited we were able to give out hand-knitted teddies sent from the UK. I wish you could have seen the excitement and joy such a simple gift engendered. Here is Irene (see left) who recently featured in a story in the weekly Guardian, proudly clutching her red teddy. She has been receiving treatment for much of the past year. Her family don't live in Kampala and cannot afford the expenses her illness has brought. The Hospice team have been able to not only support her treatment, but also to make sure she has pain control, a mattress to sleep on, food to eat, and the chance to keep up with her schooling. David (see right) has also had help with medication and treatment. Despite his illness and the need for strong morphine painkillers, you can see his delight and joy in this picture with Caroline. Quality of life shown in a smile. Adding life to days not days to life..........

Kampala visit

Greetings from Uganda. You may have been seeing something of this beautiful country on the news recently as it has just hosted CHOGM and the Queen!!! For the uninitiated, this is the Commonwealth Heads of Government Meeting and was opened by Queen Elizabeth who was accompanied by Prince Philip, and Prince Charles. Dr Anne Merriman was invited the meet the Queen and here she is dressed in her African finery with her MBE medal! Not to be outdone; wee Mary, whose Mum works at Dr Anne's shows off her Scottish teeshirt too!There has been great excitement here as it was 1954 when the Queen last visited and a beautiful wildlife area named after her; Queen Elizabeth park. Uganda is hoping many will want to come in the wake of the Queen and I can add my wee mention that the 'Pearl of Africa' is well worth a visit.

The downside was endless motorcades, roads closed and work grinding to a halt!!! Despite these challenges I have been able to meet many of the people involved in the project here in Kampala. I am in discussion about Cairdeas supporting the development of a Palliative Care Unit within the Department of Internal Medicine at Mulago Hospital and Makerere University. Mulago is the main teaching hospital and also hosts the cancer institute for Uganda and the infectious diseases center. It is the major university teaching hospital in Kampala and Uganda; and there is huge need for palliative care for the many patients and families who pass through the doors. There is an existing nurse team but little medical support. We also need to support training, research and to raise the profile of palliative care throughout the university and hospital. I will tell you more of the hospital and it's needs in a later BLOG and introduce you to some people there. I have been very encouraged by the willingness of so many to meet, plan and offer support for a Palliative Care Unit; including colleagues such as the Dean of the Medical school, Head of Internal Medicine, Ministry of Health officials and Hospice Africa Uganda staff. You can see some of the Ministry colleagues on a visit to HAU; and they have consistently supported palliative care in Uganda. It was the first country to list palliative care as an essential clinical service and to approve training for morphine nurse prescribers.

All in all this is an exciting project and we hope to have some definite plans in place soon with a possible start date of June 2008. If you want to support this please let us know as adequate funding will be a crucial factor in making dreams a reality.

Lastly, here is a photo taken by a friend and Cairdeas supporter, John Daniels, of Lake Albert. So beautiful!!

World Hospice Day

October 6th 2007 is a day to highlight issues of hospice and palliative care worldwide. There will be many many events across the globe, with details on http://www.worldday.org/ This year the theme is 'Across the ages - children to older people', and raises issues of access to care. A new report also highlights the scandal that many many people have not even basic pain control. Called 'Access to pain relief - an essential human right', it can be downloaded via this weblink. http://www.worldday.org/documents/access_to_pain_relief.pdf Many messages of support have been received such as this statement by the Irish rock star and campaigner Bono, "In the poorest countries, where so many people are fighting for their lives, the conditions of death don’t get much of a look in. But how we care for the sick and dying is surely a litmus test of our humanity. Just as we fight for equality in life, we should fight for equality in death.”

Let me give you a flavour of the problem. A colleague in Africa shared last year the tragedy of caring for patients when there is no access to analgesia. A young woman with severe pain due to her progressive breast cancer asked over and again for help. Her doctor had very little to offer and eventually had to admit this to her. She thanked him and went home to take her own life. We can only guess at the despair and suffering that goes unacknowledged and unsupported. Yet we have seen in Uganda, Kerala and many other countries that pain relief can be made affordable and available. (see the picture of oral morphine in Hospice Africa Uganda and Abdul Aziz, a patient in Kerala whose pain was controlled with oral morphine) A few months ago I had the privilege of spending time in India with journalists from the New York Times; Donald G McNeil Jr and Ruth Frensom, who were researching the issue of lack of access to morphine. The 2 articles appeared on the front page of the New York Times Sept 10th and 11th. Please read them by accessing the links below; and make sure you watch the audio-visual. It is such an excellent overview entitled 'Drugs banned; many of the world's poor suffer in pain.'

http://www.nytimes.com/2007/09/10/health/10pain.html?_r=1&oref=slogin
http://www.nytimes.com/2007/09/11/health/11pain.html

Finally, here is Charles. He works as a clinical medical officer in Sierra Leone where there is a palliative care service called Shepherd's Hospice. Charles and his team face huge problems; including no oral morphine, lack of electricity, prohibitively expensive fuel and a ratio of 1 doctor to 54,000 people.

Let us do all we can to raise the awareness of these issues and to support Charles and many like him who are seeking to overcome the challenges and ensure care is available to all who are in need.

Nairobi and Malawi

September 2007 saw more than 400 delegates from over 30 countries gather in Nairobi, Kenya for the 2nd conference of the African Palliative Care Association (APCA). It was an exciting few days with delegates from such different countries having a chance to learn, share and plan. The energy and commitment shone through - but also the huge challenges facing those trying to ensure palliative care reaches those who need it most. The 'giants' of African palliative care were acknowledged and thanked (see left). East and South Africa have seen the greatest palliative care developments but there were delegates from West Africa and the francophone countries that were beginning to see changes. The delegation from Rwanda (see left) took time to plan together with a very proud Grace (front wearing white) who is about to graduate with a Diploma in Palliative care from Nairobi/Oxford Brooks; the first nurse to do so in Rwanda. Across the continent morphine availability and accessibility remain major barriers; as do other resources and training.

I then made the journey to Malawi with my 2 colleagues Prof Scott Murray and Dr Dorothy Logie. We were facilitating a Master trainer's course in the capital Blantyre; and supported by funding from the Scottish Executive. The course had been jointly arranged by the Palliative Care Association of Malawi (PCAM) and the Ministry of Health and sought to train the leaders in Malawi to teachers and trainers. It was a challenging week but inspiring and rewarding to work with such committed participants. They represented the key people who will take the palliative care agenda forward in Malawi - and very encouragingly, included senior participants and facilitators from the Ministry of Health. This government support will be crucial. We were also joined by Fatia Kiyange from APCA as a co-facilitator which again represents wider African support.

Malawi faces many challenges with significant HIV/AIDS prevalence, high maternal mortality, scarce resources, few doctors and a low GDP. Despite these challenges there is much being done in palliative care. There is an agreed manual for training and plans to include palliative care across the health sectors, including home based care. Making sure this training makes a difference in the villages and hospitals remains a challenges but we wish our colleagues well in Malawi as they seek to address these needs. It is a beautiful country - and the place where the idea for Cairdeas was born. You can see me under the baobab tree where the first Cairdeas vision was drawn up; maybe even the same tree that David Livingstone sat under! Lastly, sunset over the Shire River to the sound of hippos.